Xtandi failed/major progression in 3 months

I can't believe how mean and brutal this disease can be. My husband started Xtandi in March because of progression of multiple new lesions. It dropped the PSA as low as .8 the first couple months. By June it was creeping up and went to 1.8. The medonc ordered a PET scan to see if he had progressed.
We were shocked to find out he has not only "multiple" new lesions and the old lesions have intensified and grown. So bad that he has a vertebrae in the lower spine that is all lesion and 2 in the upper back are almost all cancer. He had "innumerable" new lesions to begin with and now this. He has progressed twice now with "multiple" new lesions in the skull, ribs, femur, shoulder, spine and pelvis in the last 7 months. OMG!
We saw the medonc today and he was so upset about the major progression he has.
He wants to try the Taxotere again. He wants to bypass the Zytiga for now and maybe try it at a later time.
Thanks to a suggestion from Tall Allen I asked him about getting a biopsy of one of the lesions to see if his cancer has mutated and he ordered a Cat scan to check to see if he has lesions in his liver, lungs or anywhere else. If he does he will do a biopsy, if not he will stay with the Taxotere.
Yesterday his PSA came back at 5. The PSA is no longer an indicator of what this monster is doing inside my husbands body.
We are going to check on some radiation for his spine to maybe lessen the lesions in his spine.
We are both so scared. I knew we were dealing with an aggressive type of prostate cancer but how did it become so bad in a matter of months?

To Beth, (celebrate life),
I read your post this afternoon and you gave me hope and faith again. Honestly, it gave me strength. We are feeling so defeated, but after reading your post we both felt better. Thank you for sharing that.
I am glad Gary is doing better.

Dear Teamchris,

I can remember the first time you posted, in regard to your husband's case. In both of our cases, we started out "fighting" with a PSA of over 100, by the time treatments got started. It's sobering, I know ... that kind of news is tough to hear ... you have to get your "boxing gloves on" ... but you feel like someone has tied your hands behind your back before you even get started in the boxing ring. So ... I'm mindful of your recent news and thinking of BOTH of you.

In recent months, I watched producer Ken Burns' documentary special entitled "CANCER: THE EMPEROR OF ALL MALADIES" ... the documentary showed how cancer treatments have evolved over time ... but cancer was, and still is ... an "emperor" in terms of medical conditions.

With that being said ... you've seen some successes, with the P.S.A. creeping down. Now you are facing a setback ... those are TOUGH to take. I know many of us here have faced those dreaded setbacks ... that gut-wrenching feeling ... setbacks ... dreaded beyond all words to describe them ... that's how you are feeling right now, I can tell. I want you to know I am thinking of you and truly sending you my support.

You have a case with complexities ... there are many of us here in that same category ... I've learned over time that I am being TREATED ... not cured. It took a while for me to learn the difference, and to accept the difference ... we pursue treatments ... and we have to remain hopeful. Time to get those boxing gloves on, after all !

I call P.S.A. the "Crouching Tiger, Hidden Dragon" to borrow from the movie title of the same name. The goal is to get that "tiger and dragon" locked into a cage ... and get them to hibernate !

We certainly have members here who have run through a second series of chemotherapy treatments. I have a couple of friends RIGHT NOW with complex cases ... and they are running through a second series of chemotherapy treatments and experiencing some meaningful success, when they felt their optimism waning.

This is a time to RALLY your medical TEAM together --- you need some top-notch expertise working on your case, going forward. This is tough stuff, I realize ... I got diagnosed in my 40s, quite unexpectedly, with a full-blown case of prostate cancer, followed by the discovery that the prostate cancer had already infiltrated both of my lungs.

I'm an elementary school teacher and had just started a brand new school year when I found out the news. So ... I am standing beside you RIGHT NOW as you put together a new treatment plan. Don't settle for second-best, in terms of doctors ... you've got to find a doctor who can advise you on the bone lesions and spinal involvement ... that's crucial for your case, and not to be ignored.

Since you are describing a case with complexities, let's get proactive. Have you sought out a second opinion yet for your case ? Have you assembled a top-notch medical team comprised of doctors who SPECIALIZE in advanced cases of prostate cancer ? I always say that every reader here DESERVES the best doctors they can find ... I want the best for you ...

In my case, I have a tremendous urologist and dedicated oncologist who work together as TEAM. I meet with my doctors every four weeks, year 'round, like clockwork. Beyond that, I decided to travel out-of-state and I added a UROLOGY ONCOLOGIST from Mayo Clinic in Rochester, Minnesota, who specializes in advanced prostate cancer cases. I chose Mayo Clinic because of the advanced scans and imaging capabilities that they offer. I also wanted to seek out a SECOND OPINION and add that additional level of expertise to my case. I have other friends who now face my same diagnosis, and they have also followed this same pathway.

A recent testimonial for this course of action ... one of my best friends has an advanced case of prostate cancer ... he hit some setbacks and then a "brick wall" with his local doctors, in terms of treatment strategies. He decided to seek out a second opinion and traveled to Mayo Clinic and a new treatment strategy was set up for him, and he has had some meaningful treatment success in the past few months.

We have MANY tremendous medical facilities in every corner of this country, if you need a second opinion in your case. I travel to Mayo Clinic every few months now, for follow-up scans and consultations. Other members here receive outstanding care from medical facilities throughout the country ... California, New York, Florida, Arizona, Texas ... the list goes on and on. Something for you to strongly consider ...

We have members here whose doctors are now formulating patient-specific "chemo cocktails" ... if you decide to pursue another round of chemotherapy treatments. Many doctors are blending additional components such as carboplatin into the chemotherapy mixtures, based on individual patient needs ... that would be another important topic of discussion with your team of doctors.

A friend of mine lives in a distant state, but his doctors have consulted with doctors from both M.D. Anderson in Texas and Mayo Clinic in Minnesota ... and doctors from BOTH of those medical facilities helped "brainstorm" and formulate a specific chemotherapy mixture to suit my friend's individual case, when he needed it the most. My friend was losing hope ... and this specially blended "chemotherapy cocktail" has been helping him this past year.

My doctors have stated that we can certainly run another series of chemo treatments, down the road, for my case. In your case, ZYTIGA hasn't been tried yet ... I have been on that for an entire year now. There is also the possibility of XOFIGO for the bone involvement you are describing ... all of those medications are possibilities that you will want to discuss with your doctors. You mentioned radiation, and I'm sure that is also a strong option that needs to be explored for the bone mets that you described ... so, definitely some other treatments that could provide some meaningful benefit for you ... options that are approved and ready for use RIGHT NOW, as we speak.

Sometimes, you have to become your own ADVOCATE ... you have to push and pull ... and find those doctors who can "think outside the box" and be willing to pursue cutting-edge, advanced treatments for complex cases. You have to ask those hard questions ... "What do we do next? What is your vision for our next set of treatment options? What ELSE can we try? What other treatments would be helpful? Which doctors SPECIALIZE in these areas of concern?"

A few months ago, I sat down with my doctor and did just that ... I sat down with my oncologist and together, we "mapped out" his vision of possible treatment ideas for my future ... as we continue to look ahead.

More than anything, Teamchris ... I want to let you know that I am sending you my encouragement ... support ... loyalty ... and HOPE ... to both of you.

Stay STRONG ... stay POSITIVE ... and stay DETERMINED, as you consider new treatment strategies.

May your courage be UNDAUNTED, going forward,

"Cyclone Fan" ~ Iowa State University

I'm so sorry to hear about this setback. But as Beth and Gary just showed us, sometimes it just comes together.

I know some guys who have had bone biopsies as well as soft tissue biopsies. With all those bone mets, some must be in easy-access places.

Did you notice my post today of the Keytruda trial starting in September? They haven't yet announced the locations - hopefully, some of the sites will be local. Depending on what the tissue biopsy shows, that "Cohort A" trial of Keytruda + Lynparza sounds ideal for him. In the meantime, there's no reason to hold off on another cycle of Taxotere or Jevtana, which hopefully will restore his sensitivity to Xtandi. And there are third-line hormonals coming down the pike.

I agree that zapping the spine mets may help prevent spinal compression. Zometa + Celebrex is a winning combination.

- Allen

Well that just sucks.

Hopefully the docs come up with something helpful for you.

Andrew

Hi Team Chris. Really sorry that you got more bad news. I have no treatment experience on that front, so all I can offer is virtual support.

Hello!
Just wanted to give an update on my husband.
The CAT scan came back negative for ANY organ involvement! Great news! We are so thankful.
They are doing 10 sessions of radiation on the vertbrae that has "complete replacement" to try to help with pain and hopefully strengthen the bone.
He starts Taxotere again on Monday. My concern is that he is not as strong as he was the first time they tried this.
Hopefully the chemo will at least slow the progression and he will tolerate the chemo with little side effects.
Thank you for everyone's support.

So sorry to hear about the xtandi failure and new mets. Being blindsided like that is the worst. Will he be doing weekly taxotere during radiation or full dose? We're in a similar situation with taxotere failing and mets progressing, and they recommended weekly dose then jevtana after radiation. We're also looking into the Keytruda trial. Best wishes to you both. I'll be watching for updates.

Thank you for the kind words.

Maryanddan,

He will be on every 3 week cycles like the first time he had it. The radiation oncologist said they can't do radiation at the same time as chemo.
He will finish the radiation this Friday and start chemo on Monday.
The oncologist wants to see if the Taxotere will at least slow down the progression. If not we will probably change to Jetvana or Carbopaxitel. (Not sure if I spelled that right.)
I have not researched either of those meds yet so I don't know anything about them. Just trying to take one thing at a time and hoping that something works.
I'm so sorry you all are going through this. Please know I am thinking of you and sending good thoughts to you.
This forum has been a Godsend to my husband and I.

Hello Teamchris,

You have my support and loyalty, as you embark upon a new series of treatments ...

You might want to see the thread entitled "Taxotere Side Effects" that many members of "The Chemo Club" created --- it's a thread with collective first hand experiences with Taxotere, written in "one brother to another brother" style to help others help navigate their way through chemotherapy treatments ...

I think you will find that thread very informative and helpful ... along with important strategies for minimizing side effects along the way.

Meanwhile --- thinking of you and wishing you success, as you start your new treatments ...

Sent with my best,
"Cyclone Fan" ~ Iowa State University

Update on my husband of the last insane week.
I am just heartbroken for him and hoping he can catch a break SOON!
He finished his radiation last Friday and had some diarrhea that was a "normal" side effect and nothing we couldn't handle.
Monday he had his first chemo of the second round of Taxotere.
By Tuesday night he was doubled up in pain and relentless diarrhea.
Long story short we ended up in the ER after having blood work and a CAT scan showing very low blood counts and severe inflammation throughout his whole intestinal tract.
He was admitted and it was downhill from there. He started running a high fever, extreme stomach pain and very weak.
It took them 8 hours to get the pain under control.
Turns out he has Taxotere induced colitis.
He will be in the hospital at least a week maybe more while this all heals in his belly and tube IV nutrition, pain control, and trying to get his electrolyte imbalance fixed. Unbelievable after 1 treatment. I didn't even know this was a side effect of Taxotere and he certainly didn't have this problem with the first round he had a year ago.
Please keep him in your thoughts to heal soon. I have no idea what will be next for him as far as treatment now.
I'm very scared, but trying to stay strong for him.
It is simply heartbreaking watching him and all the struggles he has had to endure.
As always, thank you for this forum and all your support.

Teamchris, so sorry to hear about this struggle. Sometimes cancer treatment can turn into a very vicious cycle, that's what it sounds like in your husbands case.

I hope the cycle can be broken soon, and Chris can gain the strength to deal with another round. Good luck, please keep us posted.

Sorry to hear Teamchris. that's just no good. I hate it for you both. Stay strong and keep the faith.